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Autism Speaks Collaborates on Prevalence Investigation of Autism in the Somali Population in Minneapolis

In Partnership with the Centers for Disease Control and Prevention and the National Institutes of Health

New York, N.Y. (January 18, 2011) – Autism Speaks, the world's largest autism science and advocacy organization, today announced a collaboration with the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to investigate the prevalence of autism spectrum disorders (ASD) in the Somali population located in Minneapolis, Minn. Autism Speaks is contributing funding to this project to be initiated in early 2011. The Autism Speaks funding will allow rapid deployment of the project.

“There have been concerns about higher prevalence of ASD in Minneapolis' Somali population. We believe it is important to verify if a true increase in prevalence exists, and if so, why it exists,” explained Autism Speaks' Chief Science Officer Geraldine Dawson, Ph.D. “In this circumstance Autism Speaks has both the resources and facility to allocate a budget to initiate this effort in a timely manner.”

In March 2009, the Minnesota Department of Health released a report that examined preschool program participation rates in the Early Childhood Special Education Programs of the Minneapolis Public Schools (MPS). Results showed that there were more children of Somali descent participating in the ASD special education programs than children from other racial and ethnic groups.

In October 2010, Somali parent and founder of the Somali American Autism Foundation, Idil Abdull, spoke at the Interagency Autism Coordinating Committee (IACC) meeting and asked that a systematic investigation of the prevalence of ASD in Somali children living in Minnesota be conducted. Subsequently, members of the committee decided to form a partnership to fund an investigation of this issue. While follow-up plans are still in the developmental stage, it is anticipated that the project will investigate prevalence of ASDs among a select population of children in Minneapolis using surveillance methods developed at the CDC.

Thomas Insel, M.D., Director of the National Institute of Mental Health and Chair of the IACC commented, “This shared effort between NIH, CDC, and Autism Speaks demonstrates how members of the IACC can respond quickly and cooperatively to an issue brought to the Committee by the public. An increased prevalence of ASD among this specific Somali population would represent both a scientific opportunity and an urgent public health need.”

If findings suggest that children of Somali descent have a higher ASD prevalence than children of other racial/ethnic groups, then future research will need to address what factors could account for the increase, such as factors related to immigration or nutrition. Such research could be of potential benefit in helping children with ASD of Somali background and understanding the causes of ASD.

About Autism
Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention has called autism a national public health concern whose cause and cure remain unknown.

About Autism Speaks
Autism Speaks is North America's largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $142.5 million to research through 2014 and developing innovative new resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks' Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light it Up Blue initiative. Also, Autism Speaks award-winning “Learn the Signs” campaign with the Ad Council has received over $249 million in donated media. Autism Speaks' family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government's response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 23 states thus far, with bills pending in an additional 14 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.

About the Co-Founders
Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners, Chairman and CEO of the Palm Beach Civic Association and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, RAND Corporation and the New York Presbyterian Hospital. Suzanne Wright has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, such as the CHILD Magazine Children's Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women's Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received numerous awards such as the first ever Double Helix Award for Corporate Leadership, NYU Child Advocacy Award, Castle Connolly National Health Leadership Award and The American Ireland Fund Humanitarian Award. In May of 2010 they received Honorary Doctor of Humane Letters Degrees from St. John's University in Queens and delivered the commencement address as the first married couple to be bestowed such an honor.